What's the history behind the intersex rights movement?

Beginning in the late nineteenth century, medicine became the primary means for dealing with intersex. Before then, the vast majority of people with intersex conditions went unnoticed by legal, religious, or medical establishments and only a few cases per year came to the attention of authorities. Presumably other people with so-called “abnormal” sex anatomies lived average lives, either because their anatomical variance was undetectable or was not considered especially important. When a newborn had a high degree of genital ambiguity, midwives, grandmothers, and other local elders appear to have assigned the sex. (In terms of sexual orientation, all people were expected to then have sexual relations solely with those who had been identified as the “opposite” sex; in many places, violation of this rule was punishable by violent, sometimes fatal means.)

However, by the late 1800s, through gynecological sciences and numerous wartime military medical examinations, doctors gained a much better sense that “abnormal” sex anatomies were actually quite common. Indeed, late-nineteenth century medical men began reporting dozens of cases a year of “hermaphroditism” and “pseudo-hermaphroditism.” Because most medical experts were politically conservative and wanted to keep sex borders clearly defined to combat open homosexuality and the rise of feminism, intersex caused them notable stress. (The conflation of sex, sexual orientation, and gender expression becomes clear in the 1890s use of the term “psychic hermaphroditism” to refer to gay men, and in the common “scientific” claim that university education physically “masculinized” women.) Therefore, biomedical specialists devised a system that would label everyone “truly male” or “truly female,” regardless of the extent and natural reality of sexual blending.

Medical doctors created an arbitrary standard based on gonadal tissue, which persists in most medical texts today. A person with non-standard sex anatomy and ovaries is seen as a “female pseudo-hermaphrodite”; a person with non-standard sex anatomy and testes, is seen as a “male pseudo-hermaphrodite”; and if a person has ovarian and testicular tissue, they are seen as a “true hermaphrodite.” Given the technological limitations of the time, Victorian doctors liked this system because they couldn’t easily diagnose “true hermaphroditism” in living people; as a consequence, for the most part the only “true hermaphrodites” were dead and dissected people and the only medical information about intersex came from posthumous examinations.

All other people thought to be intersex, including pseudo-hermaphroditic, were labeled “truly male” or “truly female” and told to act socially and sexually normative in their assigned gender. However, with improved medical techniques and increased access to healthcare, many more people were being diagnosed with a biological “true sex” that made no sense socially. (In the 1910s as today, women with androgen insensitivity couldn’t practically be labeled men just because they had testes.) And, in a bi-polar gender paradigm, there was no simple social category for those diagnosed with “true hermaphroditism.” So, by the 1920s, experts treating intersex developed a notion of gender (social role) separated from biological sex. And they began to more actively offer surgical “corrections” to bring the biological sex into line with the assigned gender. So the theoretical approaches and surgical techniques evolved bit by bit, though motivation remained the same: keeping sex categories distinct and numbering only two.

It should be noted that, in the last half of the nineteenth century, a small percentage of patients with intersex had started to ask for, and some surgeons had started to offer surgical reconstruction of large clitorises, small vaginas, and hypospadic penises. With the exception of the rare clitorectomy performed on a child because she had a large clitoris, most of the genital surgeries performed for cosmetic reasons in the nineteenth century were performed on adults at their request. Both patients and surgeons generally avoided elective surgery for reasons of safety. There is also reason to believe that most people with intersex were socially healthy without surgery; they did not disproportionately live as hermits or attempt suicide. Psychologist John Money studied adults with intersex and found—before the era of standard cosmetic surgical intervention for intersex—that they enjoyed a lower rate of psychopathology than the general population.

Nevertheless, like many other realms of biology, sexuality, and psychology, intersex increasingly became the purview of medicine. For a small number of people with intersex—namely those at risk for gonadal cancers and salt-wasting—the medicalization of intersex probably improved their health, sometimes even saving their lives. Nevertheless, most of the treatment of intersex was motivated not by metabolic health concerns, but by psychosocial concerns; as in the 1890s, by the 1950s, intersex was viewed primarily as a psychosocial problem that mixed sex categories in socially uncomfortable ways.

In the 1950s, Johns Hopkins University created a team and became the first medical center to offer an organized multi-disciplinary approach to intersex, one that sought to essentially eliminate intersex in early childhood. The approach developed there came to be known as the “optimum gender of rearing” model. The basic idea was that each child’s potential for a “normal” gender identity should be maximized by making each child’s body, upbringing, and mind align as much as possible. Because of the belief that it was harder to surgically engineer a boy than a girl, most children with intersex were made as feminine as possible, utilizing surgery, endocrinology, and psychology. A “successful” patient was one judged to be stable and “normal” (i.e., heterosexual) in the assigned gender. (In an era of vice squads raiding gay bars, it is not surprising that homosexuality appeared to most of these professionals an untenable identity.)

Though the early texts from this team advocated truth-telling and consistent psychological support, in practice many patients were deceived and given minimal psychological support. As in most of medicine, doctors made the decisions for patients. There was little investment in the ideas of informed consent or of studying outcomes in a systematic way. (It wasn’t until the 1960s that medical professionals began aggressively looking for cases of intersex.)

Psychologist John Money provided theoretical support for the Hopkins model, arguing that gender identity was largely mutable early in life, that nurture was more important than nature. His chief support for this claim came from a famous case known as “John/Joan.” The person at the center, David Reimer, was born an identical twin (not intersex) boy in 1965. While performing a circumcision, a doctor accidentally burned off eight-month-old David’s penis. David’s parents consulted with the team at Hopkins, and Money recommended they change the sex and gender of their child and raise David as a girl. For decades Money erroneously touted a successful outcome because the child reportedly had become a normal, female-identified, heterosexual girl. The truth was that David had never felt fully female. Indeed, when his parents told him the truth about what happened to him, he immediately re-assumed the gender role of a man.

It is unknown why Money—who in 1953 had found a relatively low rate of psychopathology among adults with intersex—thought people with intersex needed to have their sexes and genders surgically and socially engineered to be psychologically healthy. It is better understood why people did not question Money’s controversial theory of nurture-over-nature approach. Surgeons and psychologists liked the theory because it signified that they were providing necessary, good care to “abnormal” children. Feminists liked the theory because they preferred the idea that gender – and therefore gender norms – were socially constructed and malleable. Parents probably liked it because they could be reassured that their queer-bodied children would grow up to be straight-acting adults.

But some people didn’t like this system: people who—like David Reimer—felt mistreated at best, and medically assaulted at worst, by their medical treatment. Nevertheless, most stayed silent, believing they were alone in their experiences.

That changed in 1993, when feminist biologist Anne Fausto-Sterling published articles in The Sciences and The New York Times exposing the basic fact that intersex exists. In response, Cheryl Chase wrote a letter to The Sciences announcing the founding of the Intersex Society of North America (ISNA). She founded the group because of her own attempts to recover her history of sex-reassignment in infancy and medically-induced shame, and because of the disinterest of most of her former care providers in what had happened to her. Soon Chase had brought together dozens of people with intersex.

Though ISNA began as a support group, it quickly turned into an advocacy group because its members realized that they had suffered from similar problems. Like many of the early ISNA members, Chase drew on her political consciousness as a lesbian woman to recognize the degree to which intersex had been unnecessarily socially and medically pathologized. With the successes of the women’s health movement and the queer rights movements as a backdrop, people with intersex began agitating for openness and reform.

Early on, very few medical professionals recognized ISNA’s critiques as legitimate. Many responded that the standard of care was necessary, successful, and justified, even going so far as to actively defend lying to patients about their medical histories. Those at the top simply tried to ignore ISNA. As the leader of the newly formed intersex rights movement, Chase moved rapidly, sometimes able to engage in dialog, and having group protests when doctors would not listen. With her professional background in computer science, she was particularly adept at using the tools of the Internet to spread ISNA’s message. ISNA also supported the inquiries of researchers like Suzanne Kessler, Anne Fausto-Sterling, and Alice Dreger, and the organization engaged in media outreach as much as possible.

By about 2001, it had become clear to all that the intersex rights movement was not going away. The claims of activists were illustrated in story after story of problematic intersex treatment, as well as in research that strongly suggested gender identity is not simply a matter of nurture. The fact that medical professionals were unable to produce an intersex patient satisfied with his/her childhood treatment negated the claims that the advocacy groups solely represented the experiences of a disgruntled minority.

Finally, many medical professionals began to respond to calls for outcome data, research, full disclosure of information, and revision of homophobic and sexist protocols. The intersex rights movement undoubtedly was helped in its success by surrounding trends in favor of LBGT (lesbian, bi, gay, transgender) rights, patients’ rights, and children’s rights.

Since 1993, due to increased public education, tens of millions of people have learned about intersex. Thanks to the internet, thousands of people with intersex have mets others like them, in spite of having been told by their doctors they would never be able to do that—their conditions were supposedly so rare.

ISNA members have gone from picket lines to having a seat at the table in medical conferences. We give grand rounds presentations, help with medical school curricular development, and receive emails from physicians asking for our advice on how to handle intersex cases. Our website is recognized as the definitive source for all things intersex, and for being a life-saving porthold for thousands of people desperate for answers and directions to “their tribe”. We have convinced hospitals around the world to examine their practices, to find out what has happened to former patients, and to be accountable for the sometimes-poor effects of good intentions.

Over a decade into the work of ISNA, medical professionals are less inclined to lie to patients and parents in intersex cases, are less likely to make openly homophobic or sexist remarks, and are more likely to admit uncertainty about the right course of action. A number of teams are engaged in active outcomes research, though opinions still differ about what outcomes should be sought; some think stable gender identity and heterosexuality are the objective; others suggest it should be lack of depression.) What type of care an individual or family will receive now varies dramatically; what happens to a child with intersex today appears to depend not only on where she or he is born, but who happens to be on call when she or he is born.

But we’re not done.

Even today, the goal of many leading teams treating intersex is still to make intersex disappear. Pediatric endocrinologist Maria New, recommends Dexamethasone to women who may be carrying an XX child with CAH; these treatments do not alleviate CAH, it only makes the child’s clitoris appear smaller (and, clinicians hope, makes the child less likely to grow up lesbian). Abortion is routinely offered to women who are likely pregnant with children with intersex conditions, including Klinefelter’s Syndrome. Many surgeons maintain the paternalistic attitude that they should remove healthy testes from babies with AIS to “spare them the trauma later,” thereby denying these girls the opportunity to have a natural puberty and to come to know themselves, in a sexual way, free from surgical scars. Many endocrinologists press unnecessary—sometimes devestating—“normalizing” hormone treatments on patients who are otherwise healthy. Finally, doctors continue constructing vaginas in infants and young children, despite arguments by many medical professionals that early vaginoplasties fail too often and are unnecessary to begin with.

By contrast, as in the women’s rights movement, the civil rights movement, and the LGBT rights movements, the goal of intersex advocacy groups is to have people understand intersex conditions as human rights issues. ISNA maintains as its fundamental principle the principle also fundamental to the women’s health movement and the LBGT rights movements: that one’s genitals are primarily for one’s own use, not for the comfort of others.

Building a world free of shame, secrecy, and unwanted sexual surgeries since 1993
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